Lisa’s letter: ‘This is the worst thing that’s ever happened to me.’

When I’m at my worst, my mother will say, “I wished this happened to me and not you.” But I wouldn’t want anyone in my family to experience this. This is the worst thing that’s ever happened to me.

I’ve been living with Alopecia universalis (AU) for over 11 years now. I grew up with a full head of hair, but there were always signs that things would end up the way they did. I always had a patch of hair missing at the back of my neck, I could count the number of hairs I had growing on my arms and legs on one hand, and I would have small sections of eyelashes that would fall out, but always came back again.

Until 11 years ago when my hair started thinning all over. In a few short months, it was gone. It started to grow back once I saw a doctor. I thought, “Great, this is what should happen: You go to a doctor, get treatment, and you’ll return to the way you were before.” For 6 months it did grow back. But then it started to fall out again.

Lisa Gregory adjusts her wig in a mirror at her Worcester home

This has happened to me more than once, and it’s just as devastating the third and fourth time. I had high hopes in the beginning when my hair grew back. I could get back to my life. I could get rid of the wig, the pills, the creams. I figured once my hair grew back I could re-live my life, like a do-over.

For the first five years I dealt with Alopecia myself, not talking to anyone about my struggles other than immediate family. Overwhelmed, I finally made the decision to go to a support group. Seeing others so free and open shocked me as a newly bald person. For the next year I never missed a meeting, and I cried at every meeting, too. It’s been five years, and now I’m leading the group.

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Gregory leads the conversation at a recent meeting of her support group

Two years ago, my group was involved in a photoshoot that was organized by the National Alopecia Areata Foundation. That was the first time I exposed my naked head to be photographed, and, let me tell you, it’s a big deal when you’ve never done it before. I was sent a portrait by the photographer and was amazed at what I saw: I looked better bald than I did with a wig. The fact that I had this thought was amazing.

I have grown more confident, and I’ve gone from simply telling others I have Alopecia to educating them about what it is and how it affects me. I will fight for this in whatever way I can, whether it be leading the support group, taking part in awareness events, or taking any new treatments that come along. In some ways, this has made me stronger. I will not give up hope that someday there will be a cure that will stick once and for all.